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The effects of wheelchair mobility skills and exercise training on physical activity, fitness, skills and confidence in youth using a manual wheelchair

SOL, Marleen E
VERSCHUREN, Olaf
HOREMANS, Henricus
WESTERS, Paul
VISSER-MEILY, Johanna M A
DE GROOT, Janke F
Fit-for-the-Future Consortium
2021

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Purpose: To evaluate the effects of a combination of wheelchair mobility skills (WMS) training and exer- cise training on physical activity (PA), WMS, confidence in wheelchair mobility, and physical fitness. Methods: Youth using a manual wheelchair (n 1⁄4 60) participated in this practice-based intervention, with a waiting list period (16 weeks), exercise training (8 weeks), WMS training (8 weeks), and follow-up (16 weeks). Repeated measures included: PA (Activ8), WMS (Utrecht Pediatric Wheelchair Mobility Skills Test), confidence in wheelchair mobility (Wheelchair Mobility Confidence Scale), and physical fitness (cardio- respiratory fitness, (an)aerobic performance) and were analysed per outcome parameter using a multilevel model analyses. Differences between the waiting list and training period were determined with an unpaired sample t-test.

 

Results: Multilevel model analysis showed significant positive effects for PA (p1⁄40.01), WMS (p<0.001), confidence in wheelchair mobility (p<0.001), aerobic (p<0.001), and anaerobic performance (p<0.001). Unpaired sample t-tests underscored these effects for PA (p<0.01) and WMS (p<0.001). There were no effects on cardiorespiratory fitness. The order of training (exercise before WMS) had a significant effect on confidence in wheelchair mobility.

 

Conclusions: A combination of exercise and WMS training appears to have significant positive long-term effects on PA, WMS, confidence in wheelchair mobility, and (an)aerobic performance in youth using a manual wheelchair.

Prevalence, types, and combinations of multiple problems among recipients of work disability benefits

BRONGERS, Kor A
HOEKSTRA, Tialda
ROELOFS, Pepijn D D M
BROUWER, Sandra
2021

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Purpose: For persons on disability benefits who are facing multiple problems, active labour market poli- cies seem less successful. Besides health problems, these people perceive personal, social, and environ- mental problems. Since very little is known about these “non-medical” problems our aim was to explore the prevalence of clients experiencing multiple problems, the types and number of perceived problems, combinations of perceived problems, and associated characteristics in a group of work disability benefit recipients.

 

Methods: We performed a cross-sectional study, using self-reported data on perceived problems and socio-demographics, and register data from the Dutch Social Security Institute on diagnosed diseases and employment status. A convenient group of labour experts recruited eligible clients on work disability benefit.

 

Results: Of the 207 persons on work disability benefit, 87% perceived having multiple problems. Most reported problems were related to physical (76%) or mental (76%) health. Health problems most fre- quently occurred together with a mismatch in education, financial problems, or care for family members. Clients with lower education experienced significantly more problems than clients with an intermediate or high educational level.

 

Conclusions: Clients with multiple problems face severe and intertwined problems in different domains of life, and need tailored multi-actor work disability management.

Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

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Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

Training for the HandbikeBattle: an explorative analysis of training load and handcycling physical capacity in recreationally active wheelchair users

KOUWIJZER, Ingrid
VALENT, Linda J M
BENNEKOM, Coen A M van
HANDBIKEBATTLE group
POST, Marcel W M
WOUDE, Lucas H V Van Der
GROOT, Sonja de
November 2020

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Purpose: (1) to analyze training characteristics of recreationally active wheelchair users during handcycle training, and (2) to examine the associations between training load and change in physical capacity.

 

Methods: Former rehabilitation patients (N = 60) with health conditions such as spinal cord injury or amputation were included. Participants trained for five months. A handcycling/arm crank graded exercise test was performed before and after the training period. Outcomes: peak power output per kg (POpeak/kg) and peak oxygen uptake per kg (VO2peak/kg). Training load was defined as Training Impulse (TRIMP), which is rating of perceived exertion (sRPE) multiplied by duration of the session, in arbitrary units (AU). Training intensity distribution (TID) was also determined (time in zone 1, RPE ≤4; zone 2, RPE 5–6; zone 3, RPE ≥7).

 

Results: Multilevel regression analyses showed that TRIMPsRPE was not significantly associated with change in physical capacity. Time in zone 2 (RPE 5–6) was significantly associated with ΔVO2peak, %ΔVO2peak, ΔVO2peak/kg and %ΔVO2peak/kg.

 

Conclusion: Training at RPE 5–6 was the only determinant that was significantly associated with improvement in physical capacity. Additional controlled studies are necessary to demonstrate causality and gather more information about its usefulness, and optimal handcycle training regimes for recreationally active wheelchair users.

Work capacity assessments and efforts to achieve a job match for claimants in a social security setting: an international inventory

SENGERS, Johan H
AMBA, Femke I
BROUWER, Sandra
STAHL, Christian
2020

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Purpose: Many high-income countries are witnessing a shift of focus on eligibility for disability benefits towards promotion of work reintegration. However, little is known about how countries assess work cap- acity, and how a job match is then obtained. The current study aims to compare work capacity assess- ments and available efforts to achieve a job match in eight high-income OECD countries.

 

Methods: A survey was conducted among key stakeholders concerning organization of work capacity assessments in social security settings, and efforts made to obtain a job, across eight OECD countries: Australia, Denmark, Finland, Iceland, Sweden, the Netherlands, the United Kingdom and the United States. 

 

Results: In most countries, work capacity is assessed at several time points, with variations in moments and in information used for job matching. In countries obtaining information on personal and work levels, the search to find a job match usually begins with the persons who have disabilities.

 

Conclusion: Although a shift towards a holistic focus in work capacity assessment has been recognized, medical factors still prevail. Limited emphasis is placed on the implications of functional limitations for the possibilities of work. A holistic approach to assessment needs to be coupled with holistic support measures through provision of coordinated and high quality job matching services.

Measuring treatment outcome in children with developmental coordination disorder; responsiveness of six outcome measures

HEUS, Inge
WEEZENBERG, Daphne
SEVERIJEN, Sebastiaam
VLIELAND, Thea Vliet
VAN DER HOLST, Menno
July 2020

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Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observational study was therefore to investigate the responsiveness of six potentially suitable instruments.

 

Methods: Forty-one children (34 boys, median age 7.8 years, Inter Quartile Range: 7.2–9.2) receiving multidisciplinary rehabilitation treatment for Developmental Coordination Disorder were included (mean treatment time: 32.8 h, Standard Deviation 7.3). The following instruments were applied before and after rehabilitation: Movement-Assessment-Battery-Children-2 (MABC-2), Canadian Occupational Performance Measure (COPM), Systematic detection writing problems (SOS-2-NL), DCD-daily, Behaviour Rating Inventory of Executive Function (BRIEF), and TNO-AZL children’s Quality of Life questionnaire (TACQOL)). Change-scores (paired t-test/Wilcoxon-test) and responsiveness (Effect-sizes and Standardized-Response-Means) were calculated.

 

Results: Significant differences over time were found for the Canadian Occupational Performance Measure, DCDdaily and Movement-Asessment-Battery-Children-2 (p < 0.05). The responsiveness of these instruments was moderate-high (Canadian Occupational Performance Measure-performance Effect-Size:1.70/Standardized-Response-Mean:1.81, Canadian Occupational Performance Measure-satisfaction Effect-Size:1.65/Standardized-Response-Mean 1.53; DCDdaily-total-score Effect-Size:0.40/Standardized-Response-Mean:0.62, DCDdaily-Quality-score Effect-Size:0.74/Standardized-Response-Mean:0.89, DCDdaily-time-score Effect-Size:0.21/Standardized-Response-Mean:0.43; MABC-2-total-score Effect-Size:0.42/Standardized-Response-Mean:0.43, MABC-2-Ball-skills-score Effect-Size:0.33/Standardized-Response-Mean:0.36). Systematic detection of writing problems (SOS-2-NL), Behaviour Rating Inventory of Executive Function (BRIEF) and TNO-AZL children’s Quality of Life questionnaire (TACQOL) were not responsive to change.

 

Conclusion: Although the Movement-Assessment-Battery-Children-2 test is the most widely used instrument when measuring rehabilitation outcome in Developmental Coordination Disorder, the Canadian Occupational Performance Measure and DCDdaily seem to be more responsive and constitute a valuable addition.

Parental perspectives on care for sleep in children with cerebral palsy: a wake-up call

HULST, Raquel Y
VOORMAN, Jeanine M
PILLEN, Sigrid
KETELAAR. Marjolijn
VISSER-MEILY Johanna M A
VERSCHUREN, Olaf
June 2020

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Purpose: Sleep problems are common in children with cerebral palsy (CP) and have a large impact on child health and family functioning. This qualitative study aimed to explore parental perspectives regarding the care for sleep of their young child (age 1–8 years) with CP.

 

Materials and methods: Individual, semi-structured interviews were conducted with eighteen parents of a child with CP (GMFCS levels I-V). Inductive thematic analysis of the data was performed within each of the three preidentified domains: 1) Current situation; 2) Concerns; 3) Needs.

 

Results: In total, sixteen themes were identified across the three domains. Within the families’ Current situation, parents expressed various issues concerning the care for sleep of their child both at night and during daytime, which are hampered by perceived deficiencies in healthcare, such as limited attention for sleep and lack of knowledge among health professionals. Themes within the Concerns and Needs domains encompassed experiences in the home environment relating to child, family and social aspects, while experiences in the healthcare setting included clinical practices and attitudes of healthcare professionals, as well as the broader organisation of care for sleep.

 

Conclusions: Parents face numerous challenges caring for their child’s sleep and the burden placed on families by sleep problems is underappreciated. In order to break the vicious circle of sleep problems and their disastrous consequences on the wellbeing of families, we need to wake up to parent-identified issues and shortcomings in healthcare. Care for sleep should be integrated into paediatric rehabilitation through routine inquiries, using a family-centered and multidisciplinary approach.

Validation of the International Classification of Functioning, Disability and Health (ICF) core set for Diabetes Mellitus from nurses’ perspective using the Delphi method

WILDEBOER, Anita T
STALLINGA, Hillegonda A
ROODBOL, Petrie F
May 2020

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Purpose: To explore content validity of the ICF core set for Diabetes Mellitus from nurses’ perspective.

 

Materials and methods: A two-round Delphi study was conducted with nurses specialized in diabetes care, who were recruited by purposive sampling. Level of agreement on relevance of ICF categories was calculated using Item-level Content Validity Index.

 

Results: Twenty-seven nurses judged 147 second-level ICF categories on relevance for people with Diabetes Mellitus. Agreement was reached on 65 (44.2%) categories, of which 46 were from the ICF core set for Diabetes Mellitus, 17 were from previous validation studies, and two were additional categories that were mentioned as relevant. Forty-six out of the 65categories were derived from the component body functions and structures. No agreement was reached on 82 (55.8%) categories, of which 33 were derived from the component environmental factors.

 

Conclusions: Content validity of the ICF core set for Diabetes Mellitus was partially supported by specialized nurses. Agreement was predominantly reached on biomedical categories. Content validity of categories derived from environmental factors received little support.

 

Relevance: The nursing profession should be aware of a gap between the current biomedical focus and the desired biopsychosocial approach; the latter of which is recommended in chronic care.

Feasibility and short-term effects of Activity Coach+: a physical activity intervention in hard-to-reach people with a physical disability

KROPS, L A
GEERTZEN, J H B
HOREMAN, L D
BUSSMAN, J B J
DIJKSTRA, P U
DEKKER, R
January 2020

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Purpose: Existing physical activity interventions do not reach a considerable proportion of physically disabled people. This study assessed feasibility and short-term effects of Activity Coach+, a community-based intervention especially targeting this hard-to-reach population.

 

Methods: Feasibility was determined by reach, dropouts, and compliance with the protocol. Physical activity was measured with the Activ8 accelerometer and the adapted SQUASH questionnaire. Health outcomes were assessed by body composition, blood pressure, hand grip force, 10-metre walk test, 6-minute walk test, and the Berg Balance Scale. The RAND-36, Exercise Self-Efficacy Scale, Fatigue Severity Scale, and IMPACT-S were administered. Measurements were performed at baseline and after 2 and 4 months. Changes over time were analysed by Friedman tests.

 

Results: Twenty-nine participants enrolled during the first 4 months, of whom two dropped out. Intervention components were employed in 86–100% of the participants. Physical activity did not change after the implementation of Activity Coach+. Body mass index (p = 0.006), diastolic blood pressure (p = 0.032), walking ability (p = 0.002), exercise capacity (p = 0.013), balance (p = 0.014), and vitality (p = 0.049) changed over time.

 

Conclusions: Activity Coach + is feasible in a community setting. Indications for effectivity of Activity Coach + in hard-to-reach people with a physical disability were found.

Assessing significant others’ cognitions and behavioral responses in occupational health care for workers with a chronic disease

SNIPPEN, Nicole C
DE VRIES, Haitze J
DE WIT, Mariska
VAN DER BURG-VERMEULEN, Sylvia J
BROUWER, Sandra
HAGEDOORN, Mariet
January 2020

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Purpose: To examine current practices of occupational health professionals in assessing significant others’ cognitions and behavioral responses that may influence work outcomes of workers with a chronic disease.

 

Methods: A survey study among occupational health professionals, focusing on the assessment of illness perceptions, work-related beliefs and expectations, and behavioral responses of significant others of workers with a chronic disease. We performed linear regression analyses to investigate which factors are related to occupational health professionals’ assessment practices. We used thematic analysis to analyze qualitative data on occupational health professionals’ reasons to assess or overlook significant others’ cognitions and behavioral responses.

 

Results: Our study sample included 192 occupational health professionals. Most seldom asked about significant others’ cognitions and behavioral responses. Organizational norms and occupational health professionals’ self-efficacy were related to reported assessment practices. Reasons to assess significant others’ cognitions and behavioral responses included recognizing their influence on work participation, and occurrence of stagnation. However, occupational health professionals indicated some doubt whether such assessment would always contribute to better care.

 

Conclusions: It is not common practice for occupational health professionals to assess significant others’ cognitions and behavioral responses, although they recognize the influence of these factors on work outcomes. More research is needed as to how occupational health professionals can best address the role of significant others, and apply these new insights in their daily practice.

Pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy

VAN GORP, Marloes
DALLMEIJER, Annet J
VAN WELY, Leontien
DE GROOT, Vincent
TERWEE, Caroline B
FLENS, Gerard
STAM, Henk J
VAN DER SLOT, Wilma
ROEBROECK, Marij E
December 2019

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Purpose: Investigate pain, fatigue, depressive symptoms and sleep disturbance in young adults with cerebral palsy compared to references.

 

Materials and methods: Young adults with cerebral palsy (n = 97, aged 21–34 years) and age-matched references from the general population (n = 190) rated pain using a numeric rating scale and fatigue, depressive symptoms, sleep disturbance and global health using Patient-Reported Outcomes Measurement Information System® short forms. Scores were compared between cerebral palsy subgroups and the reference population. Correlation coefficients and linear regression analyses assessed interrelationships of health issues and associations with global health.

 

Results: Individuals with Gross Motor Function Classification System level I had less pain, fatigue and depressive symptoms, while individuals with levels II and III–V had more pain (53% and 56%, p < 0.001) and those with levels III–V more fatigue (39%, p = 0.035) than references (pain: 26%, fatigue: 14%). Pain and fatigue were more interrelated (correlation coefficients: 0.71 vs. 0.41) and stronger associated with global mental health in individuals with cerebral palsy.

 

Conclusions: Young adults with Gross Motor Function Classification System levels II–V report more pain and those with levels III–V report more fatigue than references. Pain and fatigue are highly interrelated and specifically relate to mental health in individuals with cerebral palsy.

Capability of deaf children with a cochlear implant

RIJKE, Wouter J
VERMEULEN, Anneke M
WENDRICK, Karine
MYLANUS, Emmanuel
LANGEREIS, Margreet C
VAN DER WILT, Gert Jan
November 2019

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Introduction: The main idea underlying this paper is that impairments such as deafness are particularly relevant to the extent that they lead to deprivation of capability. Likewise, the impact of healthcare services such as cochlear implants and subsequent rehabilitation can best be inferred from the extent that they protect or restore capability of those affected.

 

Methods: To explore children’s post-implant capabilities, we tested two newly developed digital, adaptive child self-report and parent-report questionnaires in 19 deaf children (aged 8–12 years) and their parents during rehabilitation, as well as in 23 age peers with normal hearing.

 

Results: Despite the impressive speech-language results that were recorded with cochlear implants, the post-implant capabilities of the deaf children we evaluated differed from those of their hearing peers, with the cochlear implant group appearing particularly disadvantaged in areas such as accessing information, communication, social participation, and participation in school.

 

Conclusion: Deaf children with cochlear implants who are performing well on linguistic and auditory tests can still experience serious limitations in desired functioning. Our findings suggest that a capability approach may reveal aspects of what is being achieved through rehabilitation that might otherwise remain unnoticed, and that could help to further improve the well-being of our patients.

Entering the labor market: increased employment rates of young adults with chronic physical conditions after a vocational rehabilitation program

BAL, Majolijn I
ROELOFS, Pepijn P D M
HILBERINK, Sander R
VAN MEETEREN, Jetty
STAM, Henk J
ROEBROECK, Marij E
MIEDEMA, Harald S
November 2019

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Purpose: Employment of young adults with chronic physical conditions entering the labor market after finishing post-secondary education remains behind compared to typically developing peers. The aim of this study is to evaluate changes in their paid employment levels after following a vocational rehabilitation intervention (‘At Work’).

 

Materials and methods: Participants aged between 16 and 27 years (n = 90) were recruited via rehabilitation physicians and a jobcoach agency and participated in a vocational rehabilitation program. Cochran’s Q and McNemar tests served to test the development of intervention participants’ paid employment over time. Chi-square tests were used to compare intervention participants’ paid employment level with national reference data selected on age and having a self-reported chronic physical condition.

 

Results: Paid employment level of the intervention cohort significantly increased from 10.0% at baseline to 42.4% at 2-years follow-up (p < 0.001). At 2-years follow-up, their employment rates approached the employment rates of national reference data (42.4% versus 52.9%, p = 0.17).

 

Conclusion: Starting from a disadvantaged position, the paid employment rate of the intervention cohort substantially increased over time, approaching the employment rate of reference data. ‘At Work’ seems to be appropriate for supporting this specific group who face obstacles to enter the labor market, to find competitive employment.

Exploring barriers to physical activity of patients at the internal medicine and surgical wards: a retrospective analysis of continuously collected data

KOENDERS, Niek
WEENK, Mariska
VAN DE BELT, Tom H
VAN GOOR, Harry
HOOGEBOOM, Thomas J
BREDIE, Sebastian J H
November 2019

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Purpose: To analyse physical activity of patients during their hospital stay and to explore the relationship between physical activity and barriers to physical activity.

 

Methods: This was a secondary analysis of physical activity data for patients admitted to the internal medicine and surgical wards. Physical activity data, collected with a wireless patch sensor, was operationalized as time spent lying, sitting/standing, and walking. Barriers to physical activity included patients’ pain levels, the use of urinary catheters, intravenous tubing, oxygen lines, drains, and level of dependence. Regression analysis explored the relationship between physical activity and barriers to physical activity.

 

Results: Physical activity data were collected in 39 patients (aged 27–88, mean 54 years) during hospital stay. Patients were admitted for a median of 10 d (interquartile range [IQR]: 7–15 d). These patients were lying for a median of 12.1 h (7.6–17.7), sitting/standing 11.8 h (6.3–15.7), and walking 0.1 h (0–0.3) per day. Time lying during the day related to pain levels (β = 0.4 h per unit increase in pain, p < 0.01) and drain use (β = 3.1 h, p < 0.01).

 

Conclusions: Patients spent the most time during the hospital stay lying in bed. Improved pain management and decreased drain use may be worth exploring to increase inpatient physical activity.

Preferences regarding the way of use and design of a work ability prognosis support tool: a focus group study among professionals

LOUWERSE, Ilse
HUYSMANS, Maaike A
VAN RIJSSEN, Jolanda H J
OVERVLIET, Joyce
VAN DER BEEK, Allard J
ANEMA, Johannes R
November 2019

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Purpose: To explore the preferable way of use and design of a work ability prognosis support tool for insurance physicians (IPs) and labour experts (LEs), based on a prediction model for future changes in work ability among individuals applying for a work disability benefit.

 

Methods: We conducted three focus groups with professionals of the Dutch Social Security Institute (17 IPs and 7 LEs). Data were audio recorded and qualitatively analysed according to the main principles of thematic analysis.

 

Results: Clarity and ease of use were mentioned as important features of the tool. Most professionals preferred to make their own judgement during the work disability assessment interview with the claimant and afterwards verify their evaluation with the tool. Concerning preferences on the design of the tool, dividing work disability claimants into categories based on the outcome of the prediction model was experienced as the most straightforward and clear way of presenting the results. Professionals expected that this encourages them to use the tool and act accordingly.

 

Conclusions: The tool should be easy to access and interpret, to increase the chance that professionals will use it. This way it can optimally help professionals making accurate prognoses of future changes in work ability.

Balancing care and work: a case study of recognition in a social enterprise

BLONK, L
HUIJBEN, T
BREDEWOLD, F
TONKENS, E
2019

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This paper discusses a case study of a Dutch work-integration social enterprise (WISE) to add to the debate on the contribution of employment to the citizenship of intellectually disabled people and those experiencing mental health conditions. In current welfare state policies, the value of labour market participation is narrowed down to regular employment, as workplace support and care provisions are seen as stigmatising and segregating. We argue that a more nuanced understanding is needed of the intersection of support arrangements with the benefits of employment. Building on ‘recognition theory’ by the German philosopher Honneth, our findings show that the work-integration social enterprise under study is successfully balancing the contrasting demands of logics of care and work, leading to experiences of ‘recognition.’ However, this balance is fragile and does not undo the misrecognition of disabled people as unable to live up to the productivity norms of a capitalist labour market.

Therapy-related stress in parents of children with a physical disability: a specific concept within the construct of parental stress

BECKERS, Laura W M E
SMEETS, Rob J E M
VAN DER BURG, Jan J W
August 2019

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Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability.

 

Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities, and experiences of these parents with their child’s therapy.

 

Results: The proposed definition of therapy-related parental stress is “the subjective stress and subsequent changes of functioning and health experienced by a parent of a child with a physical disability in response to paramedical therapies (i.e., physical, occupational, and/or speech and language therapy)”. A theoretical model is proposed to describe the process of therapy-related parental stress. Available questionnaires will most likely not be valid and responsive to capture the (changes in) stress parents experience related to therapy their child receives.

 

Conclusions: This article provides a first definition of therapy-related parental stress and a theoretical model to visualise the processes with regard to this topic. Empirical testing of the presented components and their coherence is needed to confirm or improve the model. A questionnaire that specifically measures the concept of therapy-related parental stress is needed, along with evaluating therapy-related parental stress in clinical practice and research.

Improving social participation of adolescents with a visual impairment with community-based mentoring: results from a randomized controlled trial

HEPPE, Eline C M
WILLEMEN, Agnes M
KEF, Sabina
SCHUENGEL, Carlo
May 2019

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Purpose: The efficacy of a community-based mentoring program for adolescents with a visual impairment vs. care-as-usual was tested on social participation including satisfaction with social support.

 

Materials and methods: Adolescents (15–22 years; 46% boys) were randomized to an intervention group with mentors with visual impairment (N = 25), an intervention group with mentors without visual impairment (N = 26), or care-as-usual (N = 25). One-on-one mentoring activities regarded school/work, leisure activities, and social relationships.

 

Results and conclusions: Multilevel growth modelling revealed no effect of mentoring on changes in social participation compared to the care-as-usual group (participation [95% CI –0.30, 0.21, d = 0.1]; social participation composite [95% CI –0.24, 0.26, d = 0.24]). Mentees matched to mentors with visual impairments increased more on satisfaction with their social support compared to mentees matched to mentors without impairments and the care-as-usual group [95% CI 0.02, 0.49, d = 0.38]. Age, characteristics of the impairment, and number of match meetings were not associated with change in social participation during the mentoring program. This evaluation showed no benefit of mentoring for social participation of adolescents with a visual impairment. The value of mentors and mentees sharing the same disability needs further investigation. This trial is registered in the Netherlands Trial Register NTR4768.

Childhood factors predict participation of young adults with cerebral palsy in domestic life and interpersonal relationships: a prospective cohort study

VAN GORP, Marloes
ROEBROECK, Marij E
VAN ECK, Mirjam
VOORMAN, Jeanine M
TWISK, Jos W R
Dallmeijer, Annet J
Van Wely, Leontien
May 2019

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Purpose: To determine childhood predictors of participation in domestic life and interpersonal relationships of young adults with cerebral palsy (CP).

 

Materials and methods: This 13-year follow-up of an existing cohort (baseline age 9–13 years) included 67 young adults with CP (age 21–27 years). The Vineland adaptive behavior scales (VABS) and Life Habits questionnaire were used to assess attendance and difficulty in participation in domestic life and interpersonal relationships. Baseline factors were categorised according to the international classification of functioning, disability, and health. Stepwise multiple linear regression analyses determined significant predictors (p < 0.05).

 

Results: Lower manual ability, intellectual disability (ID), epilepsy and lower motor capacity predicted decreased future participation in domestic life, and/or interpersonal relationships (explained variance R2 = 67–87%), whereas no association was found with environmental and personal factors. Extending models with baseline fine motor skills, communication, and interpersonal relationships increased R2 to 79–90%.

 

Conclusions: Childhood factors account for 79–90% of the variation in young adult participation in domestic life and interpersonal relationships of individuals with CP. Children with limited motor capacity, low manual ability, ID, or epilepsy are at risk for restrictions in participation in young adulthood. Addressing fine motor, communication, and social skills in paediatric rehabilitation might promote young adult participation.

Stumbling, struggling, and shame due to spasticity: a qualitative study of adult persons with hereditary spastic paraplegia

KERSTENS, Hans C J W
SATINK, Ton
NIJKRAKE, Maarten J
DE SWART, Bert J M
VAN LITH, Bas J H
GUERTS, Alexander C H
NIJHUIN-VAN DER SANDEN, Maria W G
April 2019

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Purpose: Little is known concerning the impact of chronic spasticity on physical activities, social participation, and well-being, and whether patients’ needs are addressed by current treatments. This study aims to investigate these lacunas in persons with a pure form of hereditary spastic paraplegia (HSP), in whom spasticity is a prominent symptom.

 

Methods: Fourteen patients with a pure form of HSP were interviewed. These interviews were recorded, verbally transcribed, and thematically analyzed.

 

Results: Four themes were identified which can be reflected by the phrases: (1) ‘I stumble’, (2) ‘I struggle’, (3) ‘I feel ashamed’, and (4) ‘I need support’. Balance and gait problems led to limitations in domestic activities, employment, and recreation. ‘Stumbling’ also occurred due to pain, stiffness, and fatigue. Struggling was related to the continuous need for adaptation strategies, including the abandonment of some activities. Participants further reported feelings of shame, fear, and frustration. Lastly, they needed more support in daily activities than currently provided.

 

Conclusion: Besides treating spasticity-related motor impairments, patients with HSP need practical support for optimizing their physical activities and social participation. They also seek attention for the non-motor consequences of their chronic spasticity to improve their well-being. Patient-reported outcomes might help to address these needs.

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